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bboop
10-31-2009, 01:04 PM
My 18 year old son was just diagnosed with both Crohn's and Wegener's. He's been in the hospital (Beth Israel, Boston), for two weeks now and had just about every specialty known to man working him up. A lung biopsy was the defining procedure and he definitely has Wegener's.

My husband is a doctor and is very freaked out -- freaked out beyond words. My son is a senior in high school. He's been started on a high dose of intravenous preg for 3-days in the hospital and then he'll be released from the hospital and put on 60mgs. of preg, plus Cyt (or something that starts like that -- it's a cancer drug), for 3-months. The rheum. who is working with us was very optimistic that our son will tolerate everything just fine and will be able to go back to school, but his Crohn's doctor isn't so optimistic. She said tonight "He has a long road ahead of him." Needless to say I'm very freaked out. My son goes to boarding school and at this point, there is no way we can send him back to school not knowing how he's going to react to the meds. He's determined to continue applying to college and get his apps in. He has to bank his sperm next week, before they start the cancer med., in case it makes him sterile. This is all so much -- overwhelming, really. It's like one day he was fine, the next day he had stomach problems, and the day after that he had fever and strep and a runny nose and a cough and it all went downhill from there. Only lung involvement with the Wegs so far -- no kidney involvement YET. Any advice would be much appreciated. Should he take the year off from school? Does anyone tolerate the cancer med without getting sick to their stomach? What can I do for my kid? He's moody as it is -- how bad are his moods going to get, exactly? Any and all advice is most welcome. Oh -- I asked about the new drug that I read about on here -- something that starts with an "R," and the rheumatologist said that the initial study wasn't big enough so that she'd recommend it to start. She consulted with some bigwig Weg's specialist at Boston University and said he agreed with her treatment plan. She says she has a number of Weg patients who are doing great and who have been in remission for years. Is she just painting a very sunny picture or does this happen?
Thanks everyone for your advice. I am a very worried and freaked out mother.

Sangye
10-31-2009, 02:51 PM
I'm so sorry to hear about your son's diagnosis. You and your husband are right to be so concerned. Wegs is no small thing and neither are the drugs that are used to treat it.

I urge you to get to Dr Peter Merkel, director of Boston Univ Vasculitis Center ASAP. With Wegs you can't just have a regular rheumatologist or one that has treated a few Wegs patients. You really need an expert-- they see Wegs all day every day, do Wegs research, consult on hundreds of patients around the world, and understand the nuances of this very difficult disease. It can make or break you. Even if Dr Merkel is the one your doc spoke to, please go see him in person anyway. You never know what their conversation was really like, and you'll need him for regular care.

I wouldn't trust the regular rheumy's opinion about the new drug (Rituximab/ Rituxan). The Wegs specialists are very optimistic about the latest research. If a Wegs specialist says cytoxan is the best choice for him, then fine. But get it from the horse's mouth.

To put your mind at rest, kidney involvement is not inevitable. I have only lung involvement. My Wegs doc says that Weggies who've had only lung involvement for some time are highly unlikely to develop kidney problems.

Crohn's disease certainly can occur along with Wegs, but since Wegs can affect any organ it's possible that it's really Wegs and not Crohn's. The advantage of seeing a Wegs specialist at a major hospital like BU is that the other specialists (eg GI) see tons of Wegs, too. He'll have much better co-management of his care.

Cytoxan is rough but different for everyone. It's overly toxic to me without controlling the Wegs. It's failed twice. My first rheumy made cytoxan sound like a cake-walk ("You'll just feel a little fatigued on it."). HA! It was a year before I could stand long enough to brush my teeth. Other people tolerate it much better.

You can expect sizeable mood swings--from the pred, dealing with the new diagnosis and ongoing stress of the disease. I began therapy when I was diagnosed, and it's helped me tremendously. I highly recommend it for him and for you (and husband).

It's impossible to say how your son will tolerate the treatment and if he'll be able to stay in school. I can't imagine how he can go to a boarding school during the initial treatment, though. Even if he fares well with the drugs he won't be able to take care of himself. It'd be a good idea to check into online classes or alternatives for him ahead of time.

Meanwhile, take one thing at a time. Ask anything you want. This group tons of experience and can help you through it. :)

onatreetop
10-31-2009, 04:03 PM
Sorry to hear about your son. I can't imagine one of my kids having WG. Me I am dealing with it but one of them? My oldest was tested last week for WG because of stretch markers on his back. Strange rash thing that the doc hasn't seen before. I swear that they are stretch marks. Haven't got the results yet.

When the RA found out I had WG. It was off for a whole bunch of test and magor donation at the lab. 24 tubes! Vampires! But they found what led to be the big WG. The 7 spots in my right lung was the nail. Blood work came back possitive. I have toleraded the cyt. well. My kidneys are fine aside from a few stones that were litho'd. The pred was the kicker in the begining. 60mgs , no sleeping and couldnt stop shaking. After two weeks I was lucky enough it be reduced to 40mg . That was better but still felt like a teenager that could do anything. I was lucky to have been caught early on. I am now 4 monthes in and at 15mg of pred. and 50mg cty. so far so good. I work and handle the 4 kids and hubby and mother at home. So it is very possible that after things are in control your son can still have a very full life. Dont give up hope. The shock is hard enough but you will all get through this.

Jack
10-31-2009, 06:28 PM
I agree with everything said above. :)

Cyclophosphamide (it is called different things in different countries) was not one of the drugs that bothered me much even when I was on high IV doses so a bad reaction is not inevitable. The sperm collection is a great idea. The treatment made me sterile before having a family, but even then, I want on to adopt and everything turned out good. :)

Your son may well be in for a rough ride over the next few years, this disease tends to hit you with one problem after another. But most of us have reached some sort of stable condition and a New Normal. For some this is near healthy, others of us carry a few problems.

I would not think that boarding school was an option at the moment. He is going to need quite a bit of care on occasions.

RCOSSIO
10-31-2009, 11:07 PM
Everyone reacts differently to their medications. I tolerated Cytoxan very well 150mg a day for about a year. I am currently on Cellcept and doing fine. I suggest you look into Rituxamib as a choice...less toxic to the body and has shown promising results. As Sangye said once you consult with your wegs specialist hear what they have too say.

As everything in like there is no guarantee that one med will work better than another and each body responds differently. But this disease is treatable (not curable) and with good care most of us can go on living a somewhat normal life. Your son should be fine :)

After a week in the hospital I was back in my SF agency which I had opened two weeks after my diagnosis and never missed another day.

I am surprised at how many young people are being diagnosed with WG. I was diagnosed at 40 and my uncle at 51 and we think my grandfather had it as well in 1968 at age 65. Anyway..surprise at how many young people are joining.

Doug
11-01-2009, 12:16 AM
I agree with everything above, especially the sperm deposit as Cytoxan can produce sterility. I am sympathetic with your son wanting to get on with his studies- and life- yet he needs to adjust to his new circumstances.

My biggest concern, were he to continue on to college, is the stress of adjustment to that new load of work, which, as anyone who's gone through it know, is quite a bit more demanding than high school work. On top of that, I'd be concerned about him taking his medication. Denial is part of the process. For a young guy at what should be the prime of his life, adjusting to the limitations the initial stages of treatment place on him especially may be a bit of an overload. Plus, as a weggie on Prednisone, there is a sense on huge amounts of energy that are not there: I would worry about your son trying to overdo things until his Prednisone level dose is reduced to a level where the excess energy delusion fades.

I recommend this website for the Vasculitis Foundation, an organization started by a nurse who came down with Wegener's who couldn't find the support she needed when she was dealing with this disease. Freaked out is a reasonable reaction, incidentally

Front Page | Vasculitis Foundation (http://vasculitisfoundation.org/)

They have a particularly good section on frequently asked questions of new patients.

As a parent, we are glad we can help you deal with the multiple issues that come up. Hang in there. You aren't alone. It helps that your husband is a doctor, I think, in that he can ask questions of the specialists in a way they understand. Sometimes the hardest part of being a weggie is learning medical jargon so you can communicate effectively with your doctors.

Finally, I'd encourage your husband and son to spend some time reading through this forum. It will help, I think, to get them used to what it's like to be a weggie, what issues you might encounter in future, once your son's condition is stabilized and he's in remission (i.e. hasn't any symptoms- the blood work sometimes disagrees with how you feel, and there isn't a hardfast definition of what remission in WG patients is). It may be particularly helpful for your husband to go through the forum, though, because he is a father before a doctor. Freaked out is a reasonable reaction at this stage, I think, but the best way to counter that is to get on internet, find as much information as you can on the conditions your son's dealing with, come back here as often as you need to ask questions of us from our point of view as patients (there are parents as well, and I bet they'll help!). When it comes to Wegener's, knowledge definitely is power. It will help you keep your head on straight when you emotions are throwing you into a spin.

bboop
11-01-2009, 06:56 AM
Thank you to everyone who has replied to my thread. My husband and daughter (senior in college), are at the hospital with my son. I slept very fitfully last night and woke up feeling exhausted. I had a hair appointment that I was determined to keep (strange how vanity comes up at a time like this), and was going to go to the hospital from there. My emotions were going up and down, but mostly down at the hairdressers and I kept on nodding off -- when I woke up felt like I wanted to scream. Realized I needed to come home and take a tranquilizer (Klonopin), and get some sleep. I was stopped yesterday by a policeman who told me I failed to stop my car for someone in a crosswalk -- I always stop for people in crosswalks. I didn't even remember seeing anyone in the crosswalk. I gave the policeman my license and registration and then, I started crying and I told him that I've had a kid in the hospital for 2-weeks and that I'm just exhausted and that I honestly had no memory of seeing anyone in the crosswalk. He got really nice and told me he had a kid at Children's Hospital once and understood. He let me go. I drove right over to Starbucks and got myself a large coffee.

I feel unbelievably anxious and scared -- teary, angry, furious, like I want to scream at the world. My son has serious learning disabilities, which is why he goes to the boarding school he does -- it's one of the best in the world for this kind of thing, they have a waiting list a mile long, and it's been the perfect place for him. I don't know what to do. I can't just pop him into our local public school and expect he'll do fine, because that won't happen. He loves his school so much and this is his senior year and well, you know what I'm saying. I guess I'm just feeling very sorry for my son and for my husband and me right now.

My husband went to medical school with someone who works in the Rheumy department at Boston University Hospital. He'll call his friend and see if we can get an appointment with Dr. Merkel sooner, rather than later. I just want my son, who has worked so hard to overcome so much in his life already, to be okay. I hear you all when you say it's going to be a rough few months (or more), but my son will eventually be okay or "the new," okay. And I can accept that. It breaks my heart, but I can accept it. I'm not worried that my son won't take his medicine. He's very rule driven and if he's supposed to take his medicine, he'll take it. He's good about stuff like that.

Should I plan on having a tutor come in to educate my son through the rest of his senior year and bag the boarding school? Or, should we try sending him back to school and see how it goes? I honestly don't know what to do. I would send him back on a reduced course load. As far as college goes, it seems very clear to me that my son is going to need to go to a local college that' s not all that rigorous or demanding. Somewhere where the work and the content are light, as it were. This is just so sad. This is a kid who has worked so hard and is so determined to succeed and has overcome so much in his life. And now this. I guess I'm feeling sorry for myself here. I guess I'm allowed.

bonnie

Sangye
11-01-2009, 07:36 AM
You ABSOLUTELY are allowed to feel sorry for yourself and your son. The anger, frustration, fear--all completely normal. If you didn't feel like that, you'd be in denial. Even under the best circumstances Wegs is difficult and will always be part of his life. You can expect some serious grieving to occur for all of you. It happens over time.

Given that, you've got to find a way to hold yourself together, steel yourself. Wegs is a marathon, not a sprint, and you'll need your energy to last. So scream and cry, and then gather yourself up and get back in the ring. You'll have to teach your son to do the same. Very important for long-term success. Help him apply what he's learned overcoming other obstacles. He's fortunate to arrive at Wegs with those tools-- they were hard won. :)

The concerns about school are multiple. For one thing, he'll have quite compromised immunity for a prolonged time. His exposure is too high in a boarding school, IMO. It's hard enough for kids who live at home and go to school. The treatment is also pretty heavy duty and there's no telling how he'll be affected. He may have frequent doctor visits-- pretty typical. Stress is a very, very bad thing for Wegs. Being on his own, taking steroids, compromised immunity, likely feeling poorly, etc.... It just doesn't sound good.

I suggest you call the school and see what the options are. Surely they've had kids with illnesses or injuries that keep them out of school for extended time. You may have to sit down with his teachers and the administrators to see what you can come up with.

Regarding college plans, don't go too far into the future right now unless you have to (ie, college applications). He may respond better than you can imagine or he may have difficulty.

You may be surprised about his willingness to take the meds on schedule. I'm the kind of patient who never misses a pill, and when I agree to a treatment I follow it without fail. And yet... the drug side effects can be so awful sometimes, or you just get so sick of dealing with it all that I confess to having had small rebellions at times. Not enough to trigger a flare, but enough to surprise me. It's human nature. Not swallowing the stupid pill feels like taking back control of my life, in some weird way. It's flawed and twisted logic, but there you go. (I had uncountable blood clots in legs and lungs the first week and had to do twice daily very painful blood thinner injections for 2.5 years. Every so often I just "skipped" a shot. I knew it wouldn't kill me, I recognized how dumb it was, but I felt a little better nonetheless :o)

Prednisone also makes you very forgetful--hard to think clearly on it. So he might need help remembering to take things on schedule. At the risk of lengthening this reply even more, I'll leave you with a funny story about that. When I first got out of the hospital, I was on high dose pred and was extremely weak. I could barely think straight. My mom stayed with me a couple weeks, but she wasn't used to being at high altitude (I lived in the mountains) and the low oxygen made her exhausted and mentally out of it. One morning at breakfast I couldn't remember if I took my pred only moments before. She couldn't remember either. We emptied the bottle of tiny pills--hundreds-- and started counting. We kept losing count! It took many tries, putting them in piles of 10, etc... to get through it. It was hysterical. :D

onatreetop
11-01-2009, 07:38 AM
Yes you are allowed! I still have waves of different emotions suddenly. I would wait to see the spec. doc and see how he is responding to treatment before you plan on changing all of your lives. It could be a short stay in the hosp. no one knows again it all depends on how he responds. We are hoping for you and are here,
How did the hair turnout? I am due again too.

Jack
11-01-2009, 07:41 AM
Sorry to hear the full story behind your son's schooling.

The problem is that during the early days of treatment (in my own case, it was the first few years) he will be at quite a high risk of having a flare up. This MUST be caught and treatment adjusted as soon as possible because permanent damage may well be occuring during this time. Simply feeling a bit unwell could be something as serious as renal failure so he needs to be watched over by someone who understands his condition.

Sorry to sound dramatic, but this is a life threatening condition that has a very good prognosis if treated correctly and promptly.

Have to agree with Sangye over the pill taking. After well over 20 years of it, I sometimes look at the handfull I have to take and weed out the "non essential" ones. Not a practice you can sustain I know, but it demonstartes the strain of long term medication.

jola57
11-01-2009, 05:07 PM
Hi Bonnie, you do whatever it takes to get your frustration, uncertainty and anger out of your system. I have lived with this disease for 3 years and have been on cyclo 2 times, this last one on for 12 months, 60mg pred, and now am on methotrexate and 12mg pred. I have tolerated all quite well with just some tiredness. I have had no mood swings or stomach problems. What was diagnoses as Crohn's may just be WG. It is a running joke that I am like a robber looking for a quick escape, that is I look for a quick escape to a bathroom.
I was an immunologist and my husband is an anesthesiologist. While I took the news of my illness well my husband didn't. I know that I have to deal with it after all its my life but for my husband it was devastating, he felt so impotent, with all his training there was nothing that he could do. For your husband it must be even more so because it is your son. I realy think it would be good for him to read some of our stories and follow our forum. He doesn't need to participate but just see that having this disease is not the end.
For your son, I can't tell you how he will react to the meds, we are all so individual, but for most of us, with some exceptions, we are living regular lives, some of our youngest, finish schools and continue. I do not know your situation in the boarding school, here in Vancouver we have had a number of problems with H1N1 virus. With your son starting chemo and steroid he will be totaly immuno compromised, having him bordering is not a good idea. Ask if the school would consider home schooling for a few months until he gets a good to go from his doctor. It is worth a try and your son might graduate with the rest of his chums.

coffeelover
11-02-2009, 11:05 AM
hello Bonnie,

My youngest just started college this year and I know how important that senior year in high school is. I think you should ask your son what he wants to do. Stressing all the information you have received thus far and the possible set backs he can have on immuno supressants. I would strongly encourage hand washing, masks etc to avoid any further illnesses, but I feel so bad for him to not be able to enjoy this most enjoyable part of high school. Ask the school to work with you in regards to having to miss school for appointments and general not feeling well days. Depending on the mind set of your son, but if it were me, the more "normal" my schedule was the better I would feel in general.
I do not want to dispute what these othere ver intelligent people have recommended. Believe me! They all know what they are talking about.
Lisa Coffeelover

bboop
11-03-2009, 08:24 AM
Thank you guys. You can't imagine how helpful you're being.

My son is going to be released from the hospital tomorrow. He'll receive tutoring in the mornings, provided by our school district, and we'll go to doctor appointments in the afternoon. My husband, thank goodness, is feeling quite a bit more optimistic than he was. He called a good friend of his who is a rheumy here in Boston and his friend confirmed that the Rheumy we're going to use is a great choice. Also, he said that he sees Wegener's patients and it's all not doom and gloom at all. He feels that because of my son's young age and because he doesn't have the blood marker (A ??? -- there's so much I have to learn), his prognosis is very good. I hope he's not putting a Pollyanna voice to it -- but my husband feels encouraged. On the other hand, I started going downhill yesterday. I suffer from Clinical Depression and while I've been stable for a long, long time now, I have to be vigilant. I have a call in to my psychopharmacologist (the world of mental health is one I do know about!), because I cannot possibly go down that dark black hole at this point in time.

Regarding school and college apps -- my son absolutely wants to get back to his boarding school as soon as he can. He loves it there. He has learning disabilities and his school is one of the only ones in the country that can meet his educational needs. He's very focused on going to college next year, but is willing to change his plans in terms of going far from home, to applying to places he didn't like as much, close to home. I feel terribly about this, but it's the "new," real. Right now, everything feels overwhelming, but step by step, we'll cope. My community of friends has come out in force -- they're getting ready to deliver meals, they'll do food shopping for me, etc. How lucky that I know such wonderful, giving people.

And to you -- my new community of friends -- thank you. Please keep "the cards and letters coming."

bonnie

Sangye
11-03-2009, 08:57 AM
I'm so glad he's getting out the hospital. That makes such a difference. :)

I'm a little confused about the new rheumy-- are you still going to see Dr Merkel?

The blood marker you're referring to is the ANCA test. It's used to diagnose Wegs but has little use in measuring response to treatment as they had originally hoped. I've never heard that having a (-) ANCA indicates a better prognosis. I think that is outdated thinking. They used to consider Wegs to be in remission if the ANCA went negative. But many people have active disease with a (-) ANCA, and many people are clearly in remission but still have a high ANCA. Most of the Wegs specialist have little regard for the ANCA test once diagnosis is made. Mine doesn't even order it on me.

My original rheumy almost killed me over the ANCA. He kept me on cytoxan when it was killing me, just to get the ANCA lower. Mine just kept rising.... Even my doc at Mayo Arizona (not a Wegs specialist, but treated Wegs often) wanted me on high dose steroids just because of the ANCA. The Wegs specialists rely on patient signs/symptoms, diagnostic tests and lab work indicators (inflammatory markers, kidney function, etc...) to determine prognosis and disease activity.

This doesn't mean your son's prognosis isn't good, just that only a Wegs specialist can say for sure.

I'm glad to hear you're taking care of your depression. No dark holes for you. Your son needs you up at ground level. ;)

bboop
11-03-2009, 09:08 AM
My husband's colleague said that staying with the rheumy fellow at Beth Israel seems like a really good choice. She consults with Dr. Merkel and is supervised by 2 Weggie specialists -- one at BI and the other at the Brigham. My husband's colleague says that he sees some Weggie patients and that he's noticed that those who don't have the ANCA marker to begin with seem to have a better result from the meds and can stay in remission for a long time. I don't know if this is true or not, but it's what he said. My son will start the Cytox soon -- he's been on IV pred in the hospital for 3 nights now and it's brought down his inflammation significantly. He's being sent home on pred pill form and then, after he banks his sperm, will start the Cytox, I'm sure. The rheum wants to see him the day after he's released from the hospital and he needs to get tests done every other week at the lab. It all seem so overwhelming, especially because my son doesn't drive, we're an hour from Boston, and so, everything is all up to me. I have a great community who are already organizing to bring meals and do food shopping, but I know that won't last forever. I honestly don't know what will happen with school and college apps -- we'll do the college apps, but if college has to be postponed for a year, so be it. Right now, the most important thing is health. Everyone's health.

bonnie

Sangye
11-03-2009, 09:38 AM
I hope it works out well for you at BI.

Ask your friends for help with driving. I lived alone and had to do everything by myself. So I really relied on friends to step in. I had a wonderful support network of friends. You can't carry it alone. Also see about getting the labwork done close to home.

I'm wondering if it's possible to be accepted to a college and delay entrance if he's not in shape by then. A college advisor would know.

bboop
11-03-2009, 09:49 AM
You sound pessimistic about Beth Israel. Why? My husband's friend, the rheumy, said that Dr. Merkel at BU travels a lot and is very busy and we'd probably get a lot more time with the fellow at BI. He said that since she consults with 3 specialists, we're getting the best of all worlds and she does have WG patients, herself. I'm not a doctor nor do I play one on TV nor do I know anything about Wegener's. Hence, if you've had experience with Merkel and think he's the one, let me know. I'm not talking about our seeing some small town Rheumy here -- we're going to Beth Israel, which is a Harvard teaching hospital and the place that did the diagnosis. But, I want to do what's best for my son -- although my husband will have the last word because he's a doc and feels that he knows what's best in the long run (grrrrrr).

Yes, college apps can be submitted and then, if my son is accepted, we can defer for a semester or a year. My son is hell bent on going to college in Sept, but I'm realistic and I know that remains to be seen. We'll really just have to wait and see -- what else can we do.

Is what my husband's rheumy friend said about the ANCA true -- that those with no ANCA marker tend to do better and respond to medicine better? Or is it not true at all? I want to know the truth and if we're getting old information, then I want to know that too. It may be that I have to do the cutting edge research on my own, as my husband simply trusts the docs at BI -- my husband used to be a doc at BI and he considers it his "home."

bonnie

Sangye
11-03-2009, 10:21 AM
BI is an excellent hospital. I'm only speaking about Wegs, and while they may have some increasing expertise they're not a specialty center for it. People with Wegs go to BU from all over the world. (I don't know what BI specializes in, but I'm sure there are people going there from all over the world, too. Just not for Wegs! :D)

Wegs is very unpredictable and difficult to treat. I liken it to a wildfire. Regular firefighters are helpful to put out wildfires, but they call in "Hotshot" teams who really know wildfire.

Like having a surgery-- you get the surgeon who's done the procedure a zillion times and has seen all the weirdo cases. No surprises. I'm sure your husband would agree with that.

When I was hospitalized a few months ago in Johns Hopkins, even the other JHU rheumys who are quite famous in their specialties were totally unable to diagnose/treat this current flare properly. Some said it wasn't a flare, some said it was and wanted to use much higher doses, etc...

My visits at JHU are no more rushed than any other doctors have been. The guy doesn't miss anything, and he knows me and my case inside-out. Even if they were rushed, I'll trade accuracy and expertise over time any day.

If it were me, I'd go to Dr Merkel and see what he says. There's no harm and there may be huge benefit. Even if he says the same, you won't have any nagging thoughts that make you think "What if?" :)

bboop
11-03-2009, 11:36 AM
Sangye,
I agree with you 100%. I wish there were a way I could forward your posts to my husband's email -- he will tell me he doesn't have the time/doesn't want to read a lot of anecdotal information. If I could just forward your post to him, it might make a difference. Maybe I should do a cut & paste....

I know that after speaking to his rheumy friend, my husband came out of the very deep sadness he was in and perked up enormously. Both my husband's rheumy friend and the rheumy fellow at BI were very upbeat regarding our son's prognosis. They felt he could be put into remission after 6 mos. of pred and cytox, but I had already read this board and I know better -- it's not so easy or simple. So, I'm the one who is now deeply sad and I would like our son to see Dr. Merkel or one of his associates -- I suppose I could make an appointment at BU for a 2nd opinion and my husband would be fine with that. In the meantime, our son gets released tomorrow from the hospital and he sees the rheumy at BI on Wednesday.

You are an angel sent from heaven -- thank you so much for what you do here. I am the listserv moderator for a group of 400 families who have kids with learning disabilities and I spend an enormous amount of time with those parents who have kids who are newly diagnosed, etc. Maybe this is both of our ways of "paying it forward," as it were.

Out of curiosity, how old were you when you were diagnosed? Are you able to work and if so, full-time?

bonnie

Doug
11-03-2009, 12:39 PM
Bonnie- There are so many contingencies involved in your son's care. It's good to hear your husband's feeling better about things. No matter what we suggest on this forum, you are the family that has to work out the best care for your son, based on the best information you have, and the realities you each, in the family, have to deal with personally or professionally. In my opinion, you are handling this much better than you may feel you are. That is natural, as a person, as a parent for sure, as an outsider looking in on someone else's serious health issues and trying to assure the best outcome. Don't even think about next September until you get through each day of this November. As quirky as this disease is, your son may be ready to go to the school of his choice next September. Deal with that issue when you know how he's doing at the time you start sending out applications to schools. Step by step. Day by day.

Have you ever made a timeline as a tool to help you work through a process? Perhaps that would help you. They aren't rigid things that never change, but guidelines that help you keep focused of a future goal. They can have different stuctures, but, on the simplest, least time-consuming level, a simple chronological list, in columns, in your computer works. (Make it in Excel, for example, or a spreadsheet you find easy to use.)

The first column is the event that needs to occur to reach the goal (last item in your list), in chronological order. The second column can be a date the item needs to be done, if you have a date, or an anticipated completion date. The third column can be things that come up that set the completion date forward to a later date than expected. The fourth column can be "To Do" items that will help complete the item or advance completion in some way. Using this format, it's easy to insert new items in your process as you become aware of them.

Other suggestions (asking friends to help drive your son to appointments, for example) may be part of the process that helps you get through this. That your support group is kicking in with meals and TLC is heart-warming and reassuring, too. My neighbors, my work friends, my boss, my church family all stepped in for me in many loving, thoughtful ways. In each and every kindness, my family and I knew we were blessed. Don't forget to count your blessings each day, Bonnie. Write them down in a little spiral notebook as they occur to you so you can look back at them from time to time when you need a boost and a wholesome cry! Find some sunshine in the gloom. A positive attitude will help your son as much as anything. It'll help you. Sounds trite, but I bet even your husband can vouch for the power of positive thought in a patient's healing. :):):):) times 100. I think you need a bigger boost than most people at this point!

Would it make you laugh if I told you that I took my two cats to have shots and an examination today at the vet's, and learned that the orange tiger-striped one I called Lucy actually is a neutered male? Or that this isn't the first time this has happened that I mistook a neutered male cat for a female? Or that I'm 61 year old and should have the difference figured out by now? Ha!

bboop
11-03-2009, 01:04 PM
Hi Doug,
Yes, it made me laugh that your orange tiger cat Lucy is actually Larry! Actually, I was told a number of years ago that for some reason, orange tiger-striped cats are almost always male -- I don't know why that is.

I am big into rescue and all of my cats have always been rescues. I hate to say it, but they've all been a bit messed up. Case in point: when my son was born, my neutered male cat started spraying me every time I'd nurse the baby. This was 18-years ago, so there were no antidepressants for cats back then. My vet put the cat on a tranquilizer and when that didn't work, on female hormones. That didn't work either, but we somehow "trained," the cat to only spray down in the basement, which was cement -- not finished thank goodness. We lined the basement with huge rolls of plastic that we'd change out every few months. But, I digress. Let's just say I will put up with just about anything from an animal -- call me crazy.

Fast forward to a year ago. Our cat (not the spraying one -- this one was a rather viscous biting one), died. I've always wanted a Maine Coon Cat and I finally decided that at the age of 56, I was going to break down and actually buy a purebred cat.

Whoa -- let me tell you -- this cat is *fantastic.* I'm not dissing rescue cats -- nothing of the sort -- but I've never met a cat quite like this one. He's more like a dog. He loves water and will splash in it and cup his HUGE paws and drink water out of his paws. He greets us at the door, trilling away (he doesn't mew, but trills). He follows me around the house nonstop and is a total love bug -- wants to be held and pet but doesn't make a pest of himself at all. We are all totally in love with this cat (all except the dog!), and my husband, who doesn't really like cats all that much, is completely smitten. So, that's my sort of cat story.

I hear what you're saying about Excel. I've mentioned here that my son has learning disabilities. The apple doesn't fall far from the tree. I too have LDs, mainly in spatial relationships and I cannot, for the life of me, figure out how to use or organize Excel. Many good and smart people have gone before you and failed in their explanations, so don't even try. :cool:

I can't believe what wonderful people you all are. I feel like from adversity, I've landed in a pot of gold.

bonnie

Sangye
11-03-2009, 01:56 PM
Bonnie, I understand where your husband is coming from. Wegs is a very scary diagnosis with an unclear prognosis, so I'm sure the knowledge he has about it put him into shellshock. (As a holistic physician, I can tell you it did the same for me.) Wegs is barely covered in medical school-- most docs only learn that it's so rare they'll never see it and if they do, it's bad, bad news. Hearing from his peers that there's hope snapped him out of it and he probably feels that if he heard more about it, he might get scared or depressed again.

That very fear actually kept me from joining a support group for a whopping 2.5 years. My own case was so bad and relentless, that I worried if I heard anything worse I'd become despondent. The intense isolation finally got to be too much and a year ago I found this amazing group. For awhile I did get a little down. I'd only known what my doctors had told me (no Wegs doc then) and didn't realize how complicated Wegs is and how difficult to get to remission, etc.... Eventually I came to regard the uncertainty about Wegs as a positive, too. We don't know how bad things might get BUT we also can't predict how things turn on a dime for the better. Both happen all the time with Wegs.

Many MDs give little weight to anecdotal experiences. That's okay for diseases like cancer where the variables and responses are better understood. But Wegs is so rare that Weggies can tell you as much about the disease as the docs. Wegs specialists know to listen to their patients in a way that many MDs don't, because many of the signs of active disease don't show up on tests. My inflammatory markers don't increase until my lungs are fully hemorrhaging, even when I have signs/symptoms that indicate active disease. My blood work looks magnificent until I'm ready for the ICU. Hard to believe, but it's happened twice now.

Your hubby might not learn all this until he lives with it for awhile and sees how Wegs works. Meanwhile, give him the surgeon analogy since that's something he's familiar with. If he doesn't object, get your son to Dr Merkel and then you'll have piece of mind and more info. Sometimes with reluctant spouses you have to take action and they come around later! :D

Sangye
11-03-2009, 02:08 PM
Forgot-- I'm 45 and was diagnosed at 42. I was nearly dead by diagnosis, having had Wegs for a year without knowing it. On my 3rd day in the hospital I developed uncountable leg and lung clots. (Weggies are 23% more likely to get clots) Between Wegs, the drugs and the clots I was so weakened. I couldn't stand long enough to brush my teeth for a year and was on oxygen for 1.5 yrs. I also lived at high altitude, which slowed my healing for sure! I've had a lot of complications--some life-threatening-- and haven't been able to work at all since June, 2006. I still can't walk a full grocery store. I have renewed hope that the new drug I just began will get this into remission and I can get strong and back to doing what I love.

Jack
11-03-2009, 07:18 PM
I can echo Sangye's view that Weg patients often know more than their doctors.
The main clinic that handles my treatment is a Renal clinic that is associated with a vasculitis research unit. The doctors there listen to me and assume that everything that goes wrong is Wegener's or drug related until proved otherwise. However, when I have been referred to other departments, the blinkers go on and they try to treat just their own little speciality, usually assuming that the problem is being caused by an infection. In these cases, you often have to be bold and take control of the treatment.

Doug
11-04-2009, 02:52 AM
I can echo Sangye's view that Weg patients often know more than their doctors.
The main clinic that handles my treatment is a Renal clinic that is associated with a vasculitis research unit. The doctors there listen to me and assume that everything that goes wrong is Wegener's or drug related until proved otherwise. However, when I have been referred to other departments, the blinkers go on and they try to treat just their own little speciality, usually assuming that the problem is being caused by an infection. In these cases, you often have to be bold and take control of the treatment.

As several of us have noted time and time again, weggies need to take charge in their care, to be their own advocate. Jack explains the why of it very well. If you don't take charge, you tend to be someone science experiment, win or fail. Weggies need to take the position of "I will be one of the 92% who survive and thrive with this disease!" :) On the positive side, I've found doctors appreciate an informed patient because explaining medical prodcedures, for example, take less time and they can be more sure the weggie understands the nature and ramifications of the treatment. There always will be the one like Jack describes above, however. Personally, I've found ENT doctors to be the worst listeners. Your experience may vary.

bboop
11-04-2009, 09:54 AM
My son was released from the hospital today on 60 mg. of pred. He sees the rhemy @ Beth Israel on Friday and I'm certain she's going to put him on Cytox then.

The good news is that my husband just emailed Dr. Merkel at BU earlier today and said that we would take an appointment with him any day, any time, any hour. I'm hopeful that Dr. Merkel isn't traveling (I understand he speaks all over the world), and will be able to see us.

Unfortunately, I suffer from clinical depression and anxiety. I've been very stable on the same dose of antidepressant for 10-years or so now, but about two days ago I started becoming symptomatic. Scary for me -- very scary. The last thing I can afford to do right now is to go down the tubes -- my son needs me possibly more than he's ever needed me in his life. Damn brain chemicals. In any case, I have a call in to my psychiatrist who prescribes my meds and hopefully, he'll be able to pull me out of either my fear of spiraling down or actually spiraling down. Of course, not sleeping well for 3-weeks can do this too -- but I can't let myself go here.

bonnie

Sangye
11-04-2009, 11:18 AM
Hooray! I'm so relieved. Very happy to hear that your husband really came around and is as interested as you are to have Dr Merkel's help. You won't regret it.

I recommend the book "The Gift of Fear." My therapist used it with me. The author says "The very fact that you fear something is solid evidence that it isn't happening."

His example : "As you stand near the edge of a cliff, you might fear getting too close. If you stand right at the edge, you no longer fear getting too close, you now fear falling." The falling person doesn't fear falling, they fear hitting the ground.

My example : In June I was hospitalized for the 3rd time in 2 months. I was really weak and had begun coughing up blood. My own Wegs doc wasn't able to treat me (long story) and the other JHU rheumys were in complete disagreement about the diagnosis and treatment. At one point, one of them was certain it was a Wegs flare. He said I needed to start cytoxan and 80 mg pred right away. That combo almost killed me in 2006/7.

It got worse. I have elevated intracranial pressure which can be worsened by pred. He said we needed to do a lumbar puncture first to measure my baseline pressure. So now it was lumbar puncture + cytoxan + high dose pred. THEN IT GOT WORSE. I'm on blood thinners due to a history of tons of clots, and if you do a lumbar puncture with blood that doesn't clot, you can become paralyzed. So he said, "We'll stop your blood thinners for a few days, then do the lumbar puncture, then restart the blood thinners and start 80 mg pred. And every few weeks we'll repeat all of it." Well, active Wegs makes you susceptible to blood clots, so stopping the blood thinner was terrifying. Also, because quickly lowering pred can cause the high intracranial pressure to worsen, if we started the 80 mg pred, it'd take at least a year to drop it slowly enough for me to get off it. And what if it wasn't even a flare??

By the time he explained all this, I was nearly under the bed with terror. He left the room and I began reciting to myself, "Are you on any pred right now? No? Then it isn't happening right now." I'd get terrified again, and ask myself "Is there an IV dripping pred into you right now? Are you in the middle of a lumbar puncture? Do you actually have new blood clots?" I stayed up all night (who could sleep?) telling myself this to stay calm. Morning rounds, and he returned. "I no longer think this is a flare." So all those things NEVER HAPPENED. It was amazing. Get the book! :)

PS It did turn out to be a flare, but my Wegs doc treated it much more conservatively!

bboop
11-04-2009, 01:43 PM
As I said in my previous post, my husband emailed Dr. Merkel. Not only did Dr. Merkel call my husband within 15-minutes of receiving the email, he stayed on the phone with him for 45-minutes! He wants to see our son this week and is trying to fit him in on Thursday afternoon. I can't believe the generosity of this man. My husband liked him a lot. The only trick now is getting all of my son's records from BI tomorrow. Dr. Merkel wants some very specific things -- certain pathology slides, etc. and I just hope I'm able to get them from BI in a day -- normally these things can take a week.

I started feeling better this afternoon -- the anxiety seems at its worst in the morning and early afternoon. My psychiatrist is seeing me on Thursday morning and he'll pull me out, I'm sure. He thinks that once I get past the exhaustion and initial shock of things, I'll be OK. I certainly hope so.

I looked at the book you recommended on Amazon, Sangye. It appears to be about living in the moment, no? I didn't order it because I have a bunch of books about living in the moment and they've not helped me to date -- I really do have screwed up brain chemicals and when they're correctly balanced, well, I'm correctly balanced. When they're not correctly balanced, nothing helps because quite frankly, I can't think straight!

Sangye, I can't believe all that you've been through. This is a very scary, vicious disease, isn't it? Maybe that's why I'm becoming symptomatic myself. With all the medical knowledge we have in this country, it's amazing that they can save people's lives who have WG, but they don't understand the mechanism of how or why. And, like any parent, I don't want my son to suffer and I want him to be able to finish high school and go on to college - -which is what he wants to do more than anything.

bonnie

Jack
11-04-2009, 05:26 PM
To try to put things in perspective a little - my general reading of the posts on this site leads me to think that there are far more Wegs patients out there in some form of stable condition and living fairly normal lives than ones who are in a real mess. The prognosis is generaly good these days if you get the right treatment.

Carol
11-04-2009, 07:36 PM
So sorry that your son is burdened with this disease. It's 18 months since I was diagnosed and virtually everyday I feel an improvement. Things that helped me were to try to be as normal as possible in everytihing I did ---- so maybe going back to school is OK BUT it needs to be explained that to achieve even small things takes alot of effort and that rest will have to be built into his schedule. About 11am was usually when I felt the worst. The best kind of rest for me during the day was meditation - it is different to having a sleep. There are many prerecorded ones which you just listen to (on my Ipod) so it's not hard. Excellent diet is important and nutritious snacks ..... my weakness was cake so I made beautiful sorts of healthy cakes with real butter, good eggs, fruits, nuts, etc. Maybe you could make a good fruit cake for him to take to boarding school and lots of suplies such as nuts - I craved brazil nuts - dried fruit including dates, prunes etc. I always got up during the night for a cuppa and a snack for the first 12 months.
I'm sure a school that is catering for kids with learning problems can be very flexible and if it takes 2 years to do one year of school then maybe that's OK. i'm not sure how the US system works. For the first 3 months I certainly wouldn't have been able to work or attend school so just go on how it's all improving. My mother worried about me so much - I'm 55!! -
I consider myself very lucky that I have always improved except for when I dropped the prednisoline by 5mgs and my sight started to go. I've only had one cold in the 18 months and have recently had a mild case of shingles.
Good luck with it all. I learnt what convalsecing meant. I had never given it much thought but realise the value of doing it well. explain the concept to your son. It's not used very often these days but is helpful because you see your progress and value the effort you have put in to getting well.
Regards and love to your family
Carol Lakes Entrance Australia

jeriorleans
11-05-2009, 09:53 AM
My son, age 13 was diagnosed in August. He lost his hearing within 3 months. He also has lung involvement. He was put on 60 mg of predisone and 150 mg of Cytoxan. I too was very scared (still am). He has been on the drugs now for 1 month. Although the Cytoxan causes him some nausea he has been able to attend school. There are days where he checks out early and a few days that he has checked in late but for the most part he has been attending. The first nine weeks when he was not on the treatment plan he missed 18 days. I feel your pain, its so hard to watch you child suffer. My son seems to be returning to his old self. He is outside playing again and laughing again. There are rough moments. He becomes very emotional. The weight gain has been hard on him. He has gained about 15 pounds which when your 13 adds up to 100. The predisone gave him horrible acne but now that they are going down on the dose it is improving. The mood swings haven't been that bad, I find I just have to keep him busy. I can't let him think about what is going on. Sunday nights are the worse when its quiet and calm in the house. I actually think that I am more scared then him though. Every time he coughs or has a strange ache I secretly freak out inside. A few nights ago he had a nose bleed in his sleep and he choked on it and all I could think was "what if he hadn't woke up". But we have to let them live there lives, we can't put them in a bubble. We have to let them do what they can, secretly watch, and when they don't know their limitations calmly put them back on course.

Best of luck to you.

mikecaven
11-05-2009, 10:10 AM
Sorry to hear about your son. There is a lot of hope for you with Wegeners treatment these days. I got it first when I was 33. It went into remission within a year. Same treatment that he is going through. No bad side effects with Cytoxan (150 mgs) for me. I was on prednisone, 25 mgs and had a few side effects. I had primarily lung and sinus issues.

I am now 62 and 1.5 years ago Wegeners came back (28 years later). It surprised me as I had been extremely healthy the last 28 years. This time I had some damage to my kidney was. I went on 60 mgs of prednisone (that's a lot) and 150 mgs daily of Cytoxan.

I was sick both times but the treatment has be back in remission again. I am now taking Methotrexate once a week (6 pills) and feeling great. Kidney damage causes me to be a little anemic...but the damage is not bad enough to do dialysis, etc.

So...just want you to hear my story. I am one of the longest in remission that my Dr. has heard from. Cleveland Clinic is the best at training doctors. I am in Dallas and my Dr. is John Cush. Let me know if I can answer any questions for you. My email is [email protected]

Sangye
11-05-2009, 10:21 AM
Glad to hear from you, Mike. I'm so happy you're back in remission! I hope someday they can figure out why some people go into remission easily, some take a long time, and some never do.

I think of your 28 year remission (and not just remission but excellent health!) quite often actually. Especially when things aren't going well and I'm losing hope. I'm grateful to you for posting your story the first time and for this awesome update today. :)

Doug
11-05-2009, 11:47 AM
Yes, it is especially important that parents of teens and young people just diagnosed with WG read this story, Mike, because they can take some hope from your experience! Feel free to break in in future!

As always, we try to encourage people to have realistic hopes, but never give up hope, be positive, follow doctors' instructions and treatments closely because good (i.e. remission, relatively unaffected lives) results are possible. Even when the results aren't wonderful, they are better than the 9 in 10 who used to die within two years in the dark ages before they knew how to bring WG into line.

Twenty-eight years of remission makes me feel better, too, for that matter! As usual, I want to offer this website as a source of general information about WG and other forms of vasculitis:

Front Page | Vasculitis Foundation (http://vasculitisfoundation.org/)

coffeelover
11-05-2009, 12:55 PM
WOW MIke! What an Awesome story!
Thanks for sharing
LIsa

Doug
11-06-2009, 06:24 AM
I'm happy to see Andrew added a link to a young Australian weggie's blog. You miught want to check this out, jeriorleans and Betty.

http://4trevsplace.blogspot.com/

It's quite the story, and is told from the point of view of a teenage weggie by the name of Trev

bboop
11-07-2009, 09:56 AM
So, yesterday, my husband and I took our son to see Dr. Peter Merkel @ Boston University. He's a Weg's expert. Even though our son doesn't have some of the diagnostic Wegs symptoms (no bladder involvement, no sinus involvement), the CT of the nodules in his lungs confirmed Wegs, according to Dr. Merkel.

Dr. Merkel is keeping our son on 60mg. of Pred, going down to 50mg in two weeks. Plus, he starts Cytoxen on Tuesday, after he banks his sperm on Monday. Dr. Merkel said that 3-6 mos. of Cytoxen probably won't make our son sterile or make him susceptible to bladder cancer -- the old studies showing this were in people who had taken Cytox for 2-years -- but he recommended banking sperm just in case. He did not want to put our son on Rib (can't remember the name, but it's the new drug that's being used for Wegs -- Merkel was in on the study), because our son is ANCA negative and the study was done on people who are ANCA positive. He said it might or might not work and he didn't want to take the chance that it wouldn't work.

Dr. Merkel was positive -- he told my son "We're going to get you into remission," but he also said that 50% of the people who have Wegs relapse. Those are not great odds for leading a reasonably normal life. Maybe I'm just so exhausted by the last month of in-hospital and now out-of-hospital doctor visits and medical runs an hour each way from my house -- I feel as though I could sleep for a week!

My son decided that he'd rather see Dr. Merkel than the rheumy at BI -- so Dr. Merkel graciously accepted my son as a patient. He's a very funny, kind, and sweet man and in the room next to us was a family who flew in all the way from Washington State to see him.

Dr. Merkel told my son that he can go back to school as soon as he wants -- as long as he gets weekly blood tests. My son has set the end of this month as his goal for going back. I hope it's an attainable goal.

Anyway, that's the story.

Bonnie

Sangye
11-07-2009, 10:21 AM
I'm so relieved!! :) If a Wegs specialist says your son is fine to go to school (or not fine) you can feel completely at ease going with that. If his blood counts start to trend too low, Dr Merkel will catch it in time and advise you what to do.

I know you're utterly exhausted and details start swimming in your head after awhile. Let me clear up a couple things that you can sort through later when you're more rested.

1) Wegs isn't diagnosed by certain areas being involved. (The bladder is not an area affected by Wegs) There is a "classic" presentation of Wegs-- sinus pain, bloody nose, symptoms of URI, that progress into lung and then kidney involvement. I don't know the numbers, but it seems to me very few Weggies have a classical presentation! And like I said earlier, kidney involvement is not inevitable.

2) Diagnosis of Wegs is made by (+) ANCA, tissue biopsy, symptoms/signs, other labwork (blood, urine) and diagnostic tests (eg CT scan showing nodules). There are times when a tissue biopsy isn't taken because the other signs and symptoms are so decisive.

3) It's good to know about the ctx and bladder cancer. However, I went into menopause during my 3rd month on ctx, so I'm glad he's banking those sperm just in case.

I hope you can all get some rest this weekend. You're doing a great job with all this stress. Give yourself a pat on the back and be good to yourself, okay? :)

Doug
11-07-2009, 11:56 AM
I believe the odds of getting bladder cancer for people put on cytoxan is 30 times greater than the general public. The body doesn't metabolize 100% of any drug you take in, so that's the reason, as I understand it, that there is such an emphasis on drinking lots of water with that particular drug and others, as indicated on the detail sheets pharmacists include with prescriptions and oral instructions given by doctors. You are trying to flush out as much unmetabolized drug as possible. The first thing my doctor always asked me when I was taking Cytoxan was "Are you drinking enough water?" I never learned exactly what "enough" is, so I'd try to drink at least a 32 oz. glass of water with that pill. Did it decrease my cancer risk? I guess the future will tell.:(

Sangye
11-07-2009, 12:22 PM
My doc said "enough" was whatever it took to keep the urine clear (ie, not amber colored). For most people that's probably about 2 liters.

Doug
11-07-2009, 12:28 PM
Per day, I hope! The only way I could drink two liters of fluid a day is if it was in two one liter glasses marked Pilsner Urquell! Even then I can't imagine. I did drink water several times a day from a 32oz. glass, so I may well have exceeded two liters. I filled the glass to the top, but never drank the full amount and one time.

Sangye
11-07-2009, 12:32 PM
Yes, per day! Two liters is not an overbearing amount, Doug. It's about 8 cups of water (or 68 oz, eight 8 oz glasses). I carry a 1-liter Nalgene bottle and would fill it twice a day on ctx. Easy way to keep track of my water intake.

onatreetop
11-07-2009, 03:17 PM
My urlg. Told me two quarts min. of water a day. Plus 1000mg vit. C twice a day. He said it will keep my kidney stones in check and clean out what ever is hanging around. So for so good. still have blood in the pee thought. Had it before I was dx's with weg. one of my symptoms.

Jack
11-07-2009, 06:10 PM
I think I was only on Ctx for less than a year first time, but still ended up sterile so the sperm collection is a great move.

Although the relapse rate may be 50%, this just means that another (often shorter) sesion of high dose treatment is required to bring it in check again. I relapsed several times before settling down into many years of remission.

It can sometimes be a long roller coaster ride, but there is light at the end of the tunnel. :)

Sangye
11-08-2009, 01:55 AM
Onatreetop, if you're getting kidney stones, you have a phosphorus deficiency. That'll cause plaque on the teeth as well. Phosphorus and calcium have to be in balance. If your phosphorus levels are too low, your body starts pulling calcium out of your bones to maintain a proper pH. (Calcium is the most mobile pH modulator) That excess calcium deposits in the kidneys as stones and in joints. It causes generalized stiffness after sitting for a few minutes.

Some concerns about taking 2,000 mg of vitamin C each day : The level of vitamin C that stimulates the immune system varies greatly between people and within the same person (ie, this week 2,000 mg isn't much for your body, but next week it might be)

This could work in opposition to the Wegs drugs. Keep a close eye on your Wegs symptoms to see if the vitamin C is increasing them. It might be very hard for you to tell at this point since you're newly dx'ed. If I take 1,500 mg vitamin C just 2 days in a row, I have a definite increase in Wegs symptoms.

MDs might laugh at that. They use "one size fits all" dosages for vitamins. (Not trying to diss MDs--it's a matter of not being trained in advanced clinical nutrition and relying on RDA dosages) That would mean everyone--regardless of age, gender, weight, immune status, diet, GI tract function, amount of exercise, stress level, use of meds, exposure to toxins, kidney and colon function, water intake, and other medical conditions-- should all take the same dose. A 21 yr old world class female athlete with an excellent diet just does not have the same nutritional needs as an overweight 40 yr old male who lives on Coke, McDonald's and cigarettes!

RCOSSIO
11-08-2009, 03:23 AM
Dougie,

I probably drink way too much water...about 120-140 oz a day (and I am not even on Cytoxan).

Anway, I frequently visit the restroom so often that I am sure if any fish in the ocean has WG its been cured with the amount of times I go. :D

bboop
11-08-2009, 03:51 AM
Sangye,
You're going to have to forgive me for being dense. It's not just that I'm exhausted, which I am, but also, I'm not a science person (I barely made it through biology and I don't "get," science). Hence, I'm probably going to screw up a lot of facts along the way. Thanks for being forgiving -- I know you're a major science person and if someone butchered my specialty the way I'm butchering yours -- well I don't know if I'd be as kind to them as you've been to me.

Bonnie

Sangye
11-08-2009, 04:13 AM
Please don't apologize! I love explaining this kind of stuff. I miss working as a chiropractor and this keeps my brain working. Just ask if you need more clarification. My explanations are probably off anyway, since my mind is muddied these days. :)

onatreetop
11-08-2009, 06:20 AM
I thought about the c increasing the immun. but thought that the wgs meds were stronger. I know that I can't absorob 2000mg. i believe the mgs that can be are 600? The rest goes out as waste? The symtoms have increased and I went to the RA and we did the catscan of sinus and it came back normal.How did you find out that you had the pressure in your head and spine? I seem to have a headache that wont go away. caffine, migrane meds take the edge off but it never goings away? i think I read that that was a side effect form the pred too?

How do I increase the phos. ? What vitamin ? I take about twelve now with my morning meds.

Jack
11-08-2009, 06:35 AM
What vitamin ? I take about twelve now with my morning meds.
I'm no expert on interactions, but that sounds like asking for trouble. There are plenty of side effects to the drugs you have to take without the complication of mixing them with other things. If you have a reasonable diet, there really is no need for a lot of suplements.

Sangye
11-08-2009, 06:41 AM
You can absorb way more than 2,000 mg vitamin C. Just please don't try to with Wegs!

Headaches with Wegs are tricky business. This is something your Wegs specialist will be much better about diagnosing and treating. The most common causes of headaches in Weggies are : pred, immune-suppressants and active Wegs involving sinuses.

Very rarely, Wegs can affect the brain. Ask your doc if the sinus CT included the entire brain. (I think it does but I'm not 100% sure)

The increased intracranial pressure (Pseudotumor cerebri) I developed is extremely rare with Weggies, so it's not likely you have it. (Not to be confuse with Pseudotumor orbital, which is more common with Wegs. It causes eye pain, not headaches)

It may be that your Wegs is not being controlled well enough and your sinuses are unhappy.

onatreetop
11-08-2009, 06:43 AM
I don't eat often. or regulgarly. Time is to short in the day. I really am not hungery until the afternoon. I started taking fiber pills with my other pills to help my system and stomach. It has worked out so far.The docs have the list of meds and vits. No one has said anything. My vit. D was low and they perscp. that once a month. But it is fine . Bone density scan was good too.

Sangye
11-08-2009, 06:45 AM
Regarding supplements: Can you list what you're currently taking? The supplements might be perfectly fine for a healthy person, but it's very easy to overstimulate your immune system when you have Wegs. Ironic, huh? Sick people have deeper nutritional deficiencies, yet with Wegs you can't give the body all that it really needs or the Wegs will flare up.

Jack, no matter how good one's diet is, it's impossible to get proper nutrient levels from food anymore.

Sangye
11-08-2009, 06:47 AM
Fiber pills are great. Don't take them in the vicinity of other supplements or drugs, since the fiber will absorb them and pull them out of the body too fast.

onatreetop
11-08-2009, 06:51 AM
I actully have the scan. And viewed it. I am no doctor but I thought the webbing in the sinus wasnt normal but they say yes. Couldn't really view the brain or I was trying to do it wrong. The Bactrum is back to everyday for another week. I ran out of allergy meds too. I am possitive that that isn't helping either.Have to sit with the primary for that one. Getting nowhere on the phone with them this week. Need samples cant buy more meds this month.
Sorry if this went off track. I am not sure when to ........stop? Make a new thread ?

Sangye
11-08-2009, 06:57 AM
You can start a new thread any time. Maybe we can start one called Headaches, since that's what we're discussing.

While I encourage people to learn about blood work and reading/interpreting test results, trying to read your own CT scans, MRIs, and x-rays is not a good idea. It's extremely complicated and takes a lot of training. If you see something on a study that you question, just ask your doc what it is. They can explain the anatomy, etc.... It's good to read the study reports and learn what they're talking about. Don't worry about understanding everything in the report, just skip down to the Conclusions section.

Some of my earlier docs missed things that were clearly stated on the radiology reports. Glad I read them myself!

onatreetop
11-08-2009, 07:03 AM
Morning

15 mgs pred.
81mg asprin
5mg crestor
600+D Calcium
1000 mg C
Triple omega 3-6-9
Super b complex
Vitality Multi for Women (A 3000IU, C 150mg, D200IU, E 30
iu,K 25mg , Thiamin 15 mg, riboflavin 75 mg, B6 10 mg, folate 800mcg, B12 20 mcg, pant. acid 18 mg, Calcium 250 mg, iron 18mg, phoshorus 65mg, iodine
150mg, mag 200mg, zinc 15mg, selenium 100mcg, copper 3 mg, mang 205mg, chromium 120mcg, molybdenum 75 mg. Plus other ingreds.


Started the headache thread.

nagesh
11-09-2009, 09:39 PM
very sorry to know about your son diagnosed for wegener, Long term remissions are possible hope for some breakthrough in treatments
check these links What's new in vasculitis?: From the Editors: Mayo Clinic Health Letter (http://healthletter.mayoclinic.com/editorial/editorial.cfm/i/211/t/What's%20new%20in%20vasculitis%3F/) and Identification of Novel Wegener’s Granulomatosis Susceptibility Genes | Vasculitis Foundation (http://www.vasculitisfoundation.org/node/16)
My 13year old son Master Nischal diagonised for Wege in Jan 09. We live in Bangalore (India).
His symptoms were Running nose, Sinus, Red eyes, Joint pains, Swelling in joints, Protien in urine,
Severe Cough,Skin rashes and Night swets.
Here, Doctors say Wegeners are not rare but rarely diagonised. Many times it is wrongly
diagonised as Tuberculosis.
Luckily my son was under the care of Rhematologist one Mr.Ramesh Jois who has worked in Vasculities Hospital in UK. He told he has contacts with top Wege specialist across the world and he can give thelatest proven treatments. But, he was some how not giving us hope, keep telling us many people have done well so, hope for good.
But, Our Nephrologist did'nt gave hope and made us feel it is the end.
The treatments given were methyl Prednisolone for 3 days. Cyclophosphamide once in a month for 6 cycles along with daily prednisolone started @ 40mg a day (Now on 7.5mg per day after 10 months),Azathioprine started from 7th month @100mg per day.Bactrim 25mg per day weekly twice.
His Anca came negative in the month of July 2009 ( 6 months later with treatment ) I asked doctor that is it a sign of remission, he said I can't call it remission, if I call it remission, I have to withdraw all the medicines.I can only say the decease is quite for now and child has to take medication for at least 3years from now.
Our Nephrologist kept increasing the Envas from 5mg per day to 20mg per day. he says it will absorb the protein so that Kidneys are safe.
Overall in the last 10 months journey my son had few prednisolone and cyclophosphasmide side effects issues like weight gain, moody and nausia.
It is long and tough journey with anxiety, sleepless nights and thinking of future.

Doug
11-10-2009, 12:34 AM
Welcome to the site, nagesh! I believe you are the first person from India, or Asia for that matter, to join the site. You are fortunate to find the right diagnosis and the right treatment for this disease for your son. Congratulations, too, on finding a doctor who had experience with WG. We often mention, on this site, what doctors misdiagnosed WG as before other doctors made the correct diagnosis and began proper treatment. The common thread is that the doctors tended to diagnose along the lines on their specialty or of what they usually see in their practice. In the West, doctors see the disease as rhuematism or any of several respiratory diseases. Tuberculosis is less common here, so that's a new misdiagnosis to add to the list! If you've had time to read through comments on the site yet, you may have noticed we weggies tend to view remssion as the point where we feel well and have no symptoms. While the medical definition is more specific, the patient definition is all about how we feel at any given time. The reason your son's doctor gave for not defining your son as in remission is a new one. It sounds like the Indian medical care system is as quirky and those in the rest of the world!

Sangye
11-10-2009, 02:21 AM
Hi Nagesh,
Welcome to the group! How fortunate that you have a doctor who trained with Wegs specialists! I'm glad your son is doing well. I hope his Wegs continues to get quieter and quieter and goes to sleep. :)

paige9598
11-23-2009, 10:58 AM
Hey there....I'm so sorry to hear about your son. Just like you, my teenager has recently been diagnosed. She's 14, and yes, it's very scary. I wanted to scream and shout "no fair"...She did 3 days of high-dose steroids in the hospital, and is now on 60mg of Prednisone q day. She started methotrexate a few days ago...we opted out of the cytoxan for now. She's only been on the steroids for 1 month, and is very emotional (more so than usual), has terrible acne, an enormous appetite, and has the round face....none are fun, but all very manageable. It sounds like you're going with the Rituximab (Rituxan) route...very good results I'm told, but has only been used for 3 yrs...not studied for long. That part scared us away...as well as a rare side effect called PML....please ask your doctor about it. K

Sangye
11-23-2009, 12:25 PM
Hi Paige,
Welcome to the group. We've had a lot of parents of kids and young adults join recently. It's really hard to imagine a young person going through this.

How is the Wegs affecting your daughter? Do you have a Wegs specialist? I'm surprised that they're using such high doses of prednisone, but not using cytoxan or rituxan. Methotrexate is not typically used to induce remission, but is very good at sustaining it. Of course, it depends on the individual case....

I wanted to clear up a couple of the issues you raised with rituxan. While it's only been used for Wegs for a few years, it's been used for Non-Hodgkins Lymphoma (its primary use) since 1997, and in much higher doses. A study from last month found it to be equally effective as cytoxan (and actually slighter better) without the damaging side effects.

Also, PML is a risk with any immunosuppressant or in any immune-compromised person. It's caused by a virus that most people carry. Healthy immune systems maintain it in a dormant form. If the immune system is suppressed, it can become an active infection. PML can occur in anyone with a suppressed immune system--whether it's intentionally suppressed (as in Wegs treatment) or as a result of an illness (eg, AIDS). There hasn't been any increase in cases of PML among those treated with rituxan compared to any other immunosuppressant.

I started rituxan in October, so this is why I know about it!

elephant
11-23-2009, 01:58 PM
In my case the doctors were very conservative. Since I had a kidney transplant they did not want to give me cytoxan. They started with the prednisone first, plus I was already on cyclosporine. But the high doses of pred and cyclosporine did not work. THen they tried Imuran ( had a drug reaction with that) then they started me with cellcept 2000mg with high doses of prednisone along with the cyclosporine. Basically if I wasn't coughing up blood they did not want me on cytoxan. So I am hoping this works, if not they might try the rituxan.:cool:

Jack
11-23-2009, 06:24 PM
Hi Paige, :)
I too was a little surprised to read that you opted out of using cytoxan. Choice of drug in the early days is usually non-negotiable and it just takes whatever is needed to knock the disease down regardless of side effects. Of course, everyone is affected differently and I know non of the details, I just hope that you are getting treatment from someone who knows what they are doing. Unfortunately, this is not always the case where Wegener's is involved.

Doug
11-24-2009, 05:58 AM
The possibility of sterility from Cytoxan must have been a factor in your daughter's doctor's decision.

Regardless, a decision not to use the standard pairing of this drug and Prednisone makes no sense to me either, Paige.

You don't mention where you live (country, state or province), knowledge of which can help us help you find an informed WG-specializing doctor for your daughter, or at least one with deep experience with WG, someone your daughter's current doctor can consult with. Several countries and regions in several countries are represented among us. Many of us can name world-reputable doctors we've experienced personally, too, in our path to remission, which is especially nice for people new to the weggie world.

The disease can take a slow path or one so rapid the patient is dead in weeks. For that reason, it is especially important for your daughter (and for your peace of mind) to know that your doctor is using tested, workable therapies like Cytoxan and Prednisone or has more than one doctor specializing in WG to consult with to come up with the therapy your doctor's using now.

I don't remember if you noted your daughter's doctor's specialty, but rheumatologists, typically, are in that consulting or treating tier of doctors. Pulmonologists and ENTs oftentimes are in that tier, but typically are in consultation with rheumatologists. Does that sound like your daughter's doctors?

lafounk2
12-05-2009, 02:47 AM
Sorry to write this short as I need to pick up Josh at school and take him over to Fletcher Allen in Burlington, VT for dialysis. My son, Josh, 15yo was diagnosed in April this year with WG. He too sees Dr. Merkel. We saw him first in Aug this year and Josh has a follow up on Thurs, Dec 17. Josh has been doing well other than kidney failure. Josh started on dialysis 2 weeks ago and is feeling better since he started. He currently is on 15mg Pred, Myfortic, Cellcept, BP med, Vitamins, Lipitor, Thyroid med, Panprotazone..

We'll be staying at the Hampton Inn next to Boston Med Center the night of 12/16 in case you are in the area and want our boys to meet.

We love Dr. Merkel. He is a funny guy. Although he seems a bit overwhelmed with his patient load, he is very attentive while we are there. We feel very fortunate that he's a 5 hour drive away and that he's treated hundreds of WG patients. Our main question to him on 12/17 is when he thinks Josh will be safe to receive a kidney transplant. We were told before that his disease needs to be in remission for 6-12 months. The question is when?

Take care all,
Kelly

elephant
12-05-2009, 03:17 AM
Hi Kelly, I myself had a kidney transplant 20 years ago! My brother gave me a kidney. Were a perfect match ( antigen). To make a long story short I had Wegeners before my kidney transplant, but the doctors didn't diagnose my WG disease until July of 2009. They thought I had some kind of autoimmune disease and I almost died, statyed in the hospital for months, cause they could not figure out what was wrong with me. When your son gets the kidney transplant he will be on probably cellcept or myfortic and other drugs to keep the immune system down. I am on cyclosporine, cellcept and prednisone for the wegeners/kidney transplant. Usually this medicine keeps you stable and should not have any flares. I am doing great with the kidney transplant and I adopted two beautiful children. So I am blessed! :D

bboop
12-05-2009, 02:55 PM
I'd love for our boys to meet, but there are issues. The first is that my son, Simon, went back to school on Monday -- he goes to boarding school in the central part of MA and he's already told me he doesn't want to come home for a weekend until his holiday break -- which starts on 12/18. Hence, he won't be around on the 16th.

The second issue is that Simon is pretty much in complete and total denial regarding having WG and I'm not sure he's open right now to meeting other WG people -- even if they're his age.

Hence, I want to wish you the best of luck when you see Dr. Merkel, but for now, Simon doesn't want to know from WG, except for when he takes his meds (40 mg. pred and cytoxen), every morning. To date, he's not had the acne or round face -- he's been on pred for a month now. Maybe if and when his appearance starts changing, he'll become more accepting and acknowledge his illness, but so far, no dice.

bonnie



Sorry to write this short as I need to pick up Josh at school and take him over to Fletcher Allen in Burlington, VT for dialysis. My son, Josh, 15yo was diagnosed in April this year with WG. He too sees Dr. Merkel. We saw him first in Aug this year and Josh has a follow up on Thurs, Dec 17. Josh has been doing well other than kidney failure. Josh started on dialysis 2 weeks ago and is feeling better since he started. He currently is on 15mg Pred, Myfortic, Cellcept, BP med, Vitamins, Lipitor, Thyroid med, Panprotazone..

We'll be staying at the Hampton Inn next to Boston Med Center the night of 12/16 in case you are in the area and want our boys to meet.

We love Dr. Merkel. He is a funny guy. Although he seems a bit overwhelmed with his patient load, he is very attentive while we are there. We feel very fortunate that he's a 5 hour drive away and that he's treated hundreds of WG patients. Our main question to him on 12/17 is when he thinks Josh will be safe to receive a kidney transplant. We were told before that his disease needs to be in remission for 6-12 months. The question is when?

Take care all,
Kelly

Jack
12-05-2009, 06:24 PM
Bonnie - I must say that your son is doing remarkably well! :)
He is probably the fastest recovering patient on the site so it is no wonder that he is in denial. I hope things continue to go well for him.

bboop
12-06-2009, 01:31 AM
Hi Jack,
What do you mean when you say that Simon is the "fastest recovering patient on this site?" He's currently on 40 mg pred and Cytoxan (started at 60 mg pred a month ago). We don't know if the granulomas in his lungs are gone or are dissolving. Dr. Merkel wants to do a CT scan when Simon sees him in 2.5 weeks to see what's going on in the lungs. Simon has WG and is functioning well on the pred/Cytoxan cocktail, but don't others function well on this cocktail as well? As I see it, Simon is feeling well on the medicine, but recovery is a nebulous term and we really don't know how quickly the granulomas are dissolving -- from what I understand pred masks a lot. So, we'll have to see how it goes. I feel like we've overcome one hurdle -- the initial pred/cytoxen trial. Thankfully, Simon feels well on the mixture and aside from having a huge appetite, doesn't seem to be any worse for the wear. My understanding is that things can get punky when people go off the pred/cytoxen and have to rely on other, less powerful drugs for maintenance. That, as I see it, is our second hurdle; one that we will be struggling with for a lifetime. Time will tell whether Simon does well on whatever Mr. Merkel wants to put him on after this and we'll have to see how it goes. I don't have to tell you how tricky this disease can be. So, I feel that this initial push is working well and Simon is able to get his life back, but we have to wait and see how things go from here.

Regards,
bonnie

Jack
12-06-2009, 02:54 AM
Perhaps I am misreading his current condition, but I was reacting to the fact that he has returned to school and this sounds very good indeed considering that he was only diagnosed a couple of months ago.

My own case is by no means atypical and I spent my first 2 months in hospital followed by around 5 years of flare ups and return visits. I think it is great that his condition was caught in time, but you are right, perhaps the word "recovery" is a bit too premature for this stage of the journey.

bboop
12-06-2009, 03:16 AM
Hi Jack,
Simon was in the hospital for 3-weeks and we think the WG was caught early. There's no way to really be sure of that, however. It was rampant in the lungs, but no kidney involvement that anyone could see. He was also diagnosed with Crohn's a few weeks before the hospitalization and now, I'm wondering if the WG had gone into the intestinal tract even though Crohn's runs rampant in my family. So, "caught early," is a hopeful thought, but only a thought.

Simon returned to school just about a month after being released from the hospital. As I said, he's reacted very well to the pred/cytox cocktail, which in my mind is what has allowed him to return to school. It's not that the WG is any better or worse than anyone else's -- it's that Simon is reacting well to the initial drug combo. Maybe I'm a pessimist, but I don't think so. I'm a realist. Simon is only 18 years old and as such, his body probably reacts to heavy doses of meds better than that of a person who is older. Maybe I don't know what I'm talking about -- who knows. In any case, so far, Simon is doing very well. I'm happy he's not crippled by the pred/cytoxen mix -- anything but. He's just about caught up in all of his classes and he's managed to get all of his college apps in. My mind isn't what it used to be, so I'm not sure if I've mentioned this -- but Simon has already been admitted to one of his safety schools -- with a $48K (over the course of 4-years), academic scholarship. Like, WOW! So, things are going well now, but we'll see how they go once the honeymoon phase is over (I consider the pred/cytoxen cocktail a honeymoon of sorts, as it puts the disease into remission, right?). Again, I'm not a pessimist; just a realist.

bonnie

Jack
12-06-2009, 03:32 AM
I think you can afford to cut yourself a little more slack here, he really does sound as if he is doing well and there is no reason why he should not be one of the lucky ones who gain remission and can maintain it without much in the way of medication.

Look on the bright side and deal with the crap when it arrives. :)

bboop
12-06-2009, 03:50 AM
Hi Jack,
Is it unusual for people to do well on the pred/cytoxen cocktail? I thought that the initial cocktail puts the disease into remission for the most part.

Regards,
b.

Jack
12-06-2009, 04:08 AM
Remission is probably the wrong word, there is a whole thread on the subject here (http://www.wegeners-granulomatosis.com/forum/general-wg-chat/474-flare-remission-question.html).
You are right that the initial treatment can knock down the symptoms very quickly for some people, but there are probably more for whom the treatment is very slow to work or have an extreme adverse reaction to it. They then have to go through the long drag of finding a medication that they can tolerate.
The other problem is that the initial treatment can be so agressive that it leaves little in the way of an immune system left and you can then be troubled by secondary infections.

Sangye
12-06-2009, 05:16 AM
Bonnie, I'm totally amazed at how well Simon is doing. You're correct in your thinking that the actual disease progress is one thing, while his day to day functioning is another. However, even if the pred/cytoxan is working well, that cocktail is so debilitating to most people that the idea of going to school, playing sports, etc... in the early days is unimaginable.

And even though the follow-up tests haven't been done to assess nodules and other objective signs of Wegs, two of the most important measures of disease activity are one's energy levels and ability to function. Wegs specialists place heavy emphasis on the answer to "How are you feeling?" When the Wegs is very active (or not responding to the drugs) you will know it. Extreme weakness is a key sign.

So while no one would say Simon is out of the woods or in remission-- waaay too early for that-- we can say that this bodes very well for him! :):)

bboop
12-06-2009, 05:37 AM
Hi Jack,
First of all, Simon's on a drug -- an antibiotic maybe? -- that's designed to give him some measure of protection from infection. I wish I had his meds here, but they're at school with him. Hence, I don't know the name of what I'm talking about ! (actually, you will find that I often don't know what I'm talking about! :)

I realize that an antibiotic will only offer protection if something is bacterial and not viral, but still. I think I'm talking about helps to prevent a kind of pneumonia that WG patients can be prone to, if that helps you to ID it any better.

Too, Simon received both the flu and the H1N1 vaccine and his school had their H1N1 outbreak in late October -- so there's no one there with it at this point. Hence, the kids are mostly healthy (I hope), and so far, Simon hasn't told me about anyone who's sick. Still, there's always the possibility of Simon being exposed to an infection and if that happens, we'll have to see how it goes. One day at a time and all that.

Again, we don't know how fast the drugs are working; we'll know more after the CT scan in 2.5 weeks.

I'm too worried to think we're out of the woods by any means. Simon has WG and let's face it -- WG is an aggressive and unrelenting disease. It must be taken seriously. As you well know. Unfortunately.

Regards,
b.

bboop
12-06-2009, 05:50 AM
Hi Sangye,
I keep on thinking that maybe Simon is masking how he's really feeling, but I don't think he could do that, especially not having been home for a month. I mean, we would have noticed if he wasn't feeling well and honestly, he seemed to be feeling just fine. I will say that it appeared to me as though he has ants in his pants -- very quick and fast talking, talking a lot (Simon is more the strong, silent, stoic type), and somewhat physically hyper, but nothing that raised my antennae. I know that pred can do this and so does Simon and he's not feeling particularly nervous or so he says.

I cannot say that Simon adjusted to the pred that easily. The first week out of the hospital was bad. He wasn't sleeping at all and I was very worried about that because he could barely function. However, once he started sleeping (his old, teenage, sloth-like sleep habits reemerged), then things pretty much fell into place. I will say that while at home, he was going to bed far earlier than usual -- he'd go up to his room some nights at 10pm; his old self, pre-WG wouldn't go up until midnight. Now that he's back at school, he says that he's not tired during the day at all and attends all of his classes, is doing all of his work, etc. While home, his sister had to talk him into going to the movies with her (I have to admit, I didn't want him to go because of all the germs in the movie theater, but I kept my mouth shut), as he said he was tired. She talked him into going and he seemed full of energy when they got back later that evening. So, who knows. Maybe Simon is masking some tiredness and I hope if he's pushing himself, it's not a bad thing. At the age of 18, he's able to push himself and there's not a whole lot I can do about it. And that's OK.

If the fact that Simon's back at school and functioning well and feeling fine is a good sign for his future with WG, then I'm glad. I'm still feeling very vulnerable, however, and I don't trust the waters as I know how unpredictable WG can be. So, I hold my breathe and I hope for the best. And that's really all I can do.

Regards,
b.


Bonnie, I'm totally amazed at how well Simon is doing. You're correct in your thinking that the actual disease progress is one thing, while his day to day functioning is another. However, even if the pred/cytoxan is working well, that cocktail is so debilitating to most people that the idea of going to school, playing sports, etc... in the early days is unimaginable.

And even though the follow-up tests haven't been done to assess nodules and other objective signs of Wegs, two of the most important measures of disease activity are one's energy levels and ability to function. Wegs specialists place heavy emphasis on the answer to "How are you feeling?" When the Wegs is very active (or not responding to the drugs) you will know it. Extreme weakness is a key sign.

So while no one would say Simon is out of the woods or in remission-- waaay too early for that-- we can say that this bodes very well for him! :):)

Sangye
12-06-2009, 05:59 AM
Definitely with Wegs it's best to be more concerned than not concerned enough. Sometimes Weggies are under-concerned and it's terrifying to watch....

I would bet that it's the pred making him antsy. At those doses, everyone is affected. The on/off fatigue thing is normal, too. Sometimes the pred and/or chemo seems to hit you and you get a wave of fatigue. Wegs can do that, too, but I've noticed that if it's Wegs activity, it doesn't go up and down-- you just feel wiped out endlessly.

What you're doing is perfect-- watching, rejoicing in the good things that are happening and staying present. :)

Doug
12-06-2009, 07:54 AM
I think you should celebrate Simon's ability to deal with WG as well as he has. While I admit the part about being in a theatre gave me pause, there are simple precautions (hand washing, primarily, or wearing a mask) he needs to keep in mind in these early stages in particular, one reasons parents should try to do is familiarize oneself with the disease. No one set of symptoms or results describes every case. Simon seems to be fortunate in that his youth is working for him. His response to the classic treatment is very encouraging. I presume you go with him into the examination room since he is a minor ("Aw! Let me go by myself! I'm 18!" I can hear it! Ha!), or should simply because you have some anxieties that exceed the need. Go to the questions to ask the doctor section in the Vasculitis Foundation literature, and make YOUR list, as parent, that you need to know to save yourself needless worry: you need to be on top of his illness, while avoiding the classic caregiver thing of forgetting to mind your own physical and mental health!

Front Page | Vasculitis Foundation (http://vasculitisfoundation.org/)

bboop
12-06-2009, 05:39 PM
I only go into the examination room with Simon if he requests that I be in there. At 18, Simon is a legal adult (the only thing that he's not eligible to do is to drink alcohol -- the legal age for that is 21), and he's entitled to his privacy. Usually, when doctors are dealing with someone Simon's age (ie: stuck between still being a teenager and an adult), the examination is private and then, there's a conference where parents are invited in. So, my husband and I get to talk to the doctor, unless Simon says that we can't. And, I can't imagine Simon doing that.

There is no way that Simon would ever consent to wearing a mask out in public. He's not going to do it. As I said, he's in denial regarding having a serious illness and he's also very into his appearance. He's watching what he eats so that he doesn't gain too much weight on the pred and he told us on the phone today that he's working out almost every day on the treadmill -- walking not running for an hour and then, lifting weights for 20-minutes every other day. His taste in fashion runs toward the preppy side and again, this is a kid who unless he gets terribly sick and is instructed by his docs to wear a mask, is not going to wear a mask. I agree that he probably should in a large movie theater, but again, he's at boarding school, among lots of other kids and faculty and staff and he seems to be just fine. I can't worry about it or otherwise I won't sleep at night. As long as Simon is doing fine, I'm not going to interfere.

I am starting to take care of myself again. I have appointments scheduled with my docs for all the routine stuff and I hope to get back into my exercise program next week. It's been too long and I feel like a slug.

Simon sees Dr. Merkel in 2.5 weeks or so and we'll know more then. In the meantime, I'm keeping my fingers crossed and hoping for the best. So far, so good.

Regards,
b.

Jack
12-06-2009, 06:22 PM
Most things I read say that face masks are ineffective at stopping infection coming in. They are designed to catch airbourn infection sprayed out from our own mouths. I would not wear one either! ;)

elephant
12-06-2009, 11:17 PM
I tell my kids everyday to wash their hands and don't put their fingers in their eye, nose and mouth! If you pick your nose, please wash your hands before and after. Thank you!!:eek::o

Sangye
12-07-2009, 08:32 AM
(I agree with Jack about the face masks.)

Bonnie, I'm glad that you're taking care of yourself. I think your approach about not being overly worried is good. There's only so much you can do to educate and inform Simon about things and then you just have to let it go. Worry accomplishes nothing.

...Wish I could take that last bit of advice! Worrying eats up way too much of my energy. :o

lafounk2
12-07-2009, 11:16 PM
Good morning,

Thanks so much for your reply. You are so lucky to have received a kidney from your brother with antigen match. Josh, unfortunately, may not be so lucky. Our youngest is 12yo and therefore is too young to donate a kidney to Josh. We're hoping that some day, when Josh's donor kidney no longer keeps him well, that Jacob would be able to donate if his blood type is compatible. Josh's only living kidney donor thus far is a 46 year old co-worker of mine. His blood type is compatible. Tissue type, however, showed 0 out of 6 antigen match but the crossmatch was negative which apparently is a good sign. We're hoping that a better match for Josh will be there when he's ready for transplant.

Thanks again for your advice and hope of kidney transplant success. It's a real big fear of mine and am praying things will be ok.

Thanks,
Kelly

jeriorleans
12-13-2009, 01:33 PM
My son, 13 also is tolerating the medicine fairly well. He does miss some school, maybe a day every two weeks or so because he gets worn out. I also think a lot of times he feels worse than he says because he wants to interact with the other kids. He is on the basketball team now, but it takes a toll on him. Sometimes he can barely walk afterwards, but he keeps pushing himself. I'm proud of him and scared for him at the same time.

Sangye
12-13-2009, 02:51 PM
What meds is your son on at this point?

jeriorleans
12-14-2009, 01:13 PM
He is on cytoxan 150 mg, predisone, tapering (currently at 40 every other day) and bactrim 3 consecutive days a week.

Sangye
12-14-2009, 02:43 PM
Then he's doing very well. Those are high doses! (Not unusually high, just high enough to wipe you out and make you feel exhausted. Glad to hear he's doing so well.

jeriorleans
12-15-2009, 02:14 PM
The only thing he can think about at 13 is when will I be able to lose weight. Last summer when the Wegs started showing its nasty self, he lost his appetite and lost 25 pounds in two months. I thought it was just puberty. UH DUH!!!

BonnieB
12-15-2009, 02:39 PM
my 18 year old son was diagnosed 6 months ago- spent the most of the last 6 months in the hospital- all terrible days, nearly lost him multiple times. But I didn't- he survived , and is now home. In some ways I am so happy and grateful- he is not WELL but he is BETTER. In some ways I am scared- shaken to the core, afraid to take a deep breath or plan for the future. He is in denial- has no doubt at all he will be JUST FINE. Well, he won't , but he will have a"new normal" that can still give him hopefully years of a life worth living.
Don't worry, Mom,you will do all the right stuff- somehow you will all get through this.

Jack
12-15-2009, 07:13 PM
Good post BonnieB. You show a good understanding for someone with a background of only 6 months.

I had 20 good years and raised a family after diagnosis in spite of the odd problem along the way, but treatment has improved so much over that time that the prognosis for newly diagnosed must now be pretty good. :)
Most of my current problems result from the years of heavy medication.

Sangye
12-16-2009, 02:25 AM
It must be really tough when Adult Knowledge meets Young Denial. Young people have a hard enough time believing anything could happen to them when they're healthy. I can't imagine that it changes if they become sick. I think they probably go deeper into denial than older adults do.

He'll have plenty of years worth living. The new treatments are much less harsh. Just this year the whole paradigm for treating Wegs has changed.

BonnieB
01-02-2010, 02:14 PM
anybody hear any more from this family? My 18 year old son was dx'ed in april, failed cytoxan and after several rounds of plasmaphereisis got rituxan. He is well enough to start college this spring- part time, and here at home instead of leaving to colege as we had all planned. His b/p is the biggest problem now, thankfully his terrible pain is better. We are still on prednisone taper. His docs all want himon cellcept- he refuses at present, but none of them can really cite any good studies that show its role longterm- any body heard any convincing evidence? any body else get red hot tendons and joints on this?
Thanks in advance

pberggren1
01-02-2010, 03:11 PM
Bonnie, what do you mean by red hot tendons and joints? Do you mean inflamed? I too get rock hard chunks out of my nose and larynx.

Doug
01-02-2010, 03:44 PM
CellCept is immuno-suppressive. Prednisone is used to diminish inflammation. Cytoxan, which is also immuno-suppressing, is tougher on the patient than Cytoxan, and has a long-term effect or two that makes doctors look to CellCept (in your son's case) to maintain any improvements gained with Cytoxan or other means. I'm unfamiliar with Rituxan, but both Prednisone and CellCept can cause mental states. Look into the specifics on the internet.

The main thing you and your son need to keep in mind right now is that failure to take CellCept, for whatever hard-headed reason he might have, could well cause him a flare. Is he in denial? I think he might be. Or depressed? This may seem like a terrible burden to someone his age- it is, frankly. Or to anyone of any age. Yet, you get over it or screw yourself up by resisting the orders of doctors. Stupid. Plainly that!

Help him to grow up- fast. If he wants to get on with the rest of his life, specifically university life at this point, he needs to understand that weggies can thrive (look at our Mt. Everest-climbing Cindy), but only by being good patients first, then good weggies later. I wanted a stupid car at his age, but I didn't get one until seven years later. Poor me. Life was unfair. Then I grew up, realized these things come to people who take on adult responsibilities. Likewise, university isn't high school. No one will sit there holding his hand. No one will care that he has bad days and good. First, they won't have knowledge of what a "bad day" can truly be (he does- a step toward adulthood!), and a "good day" won't have any real meaning to them until they understand "bad days". Second, because weggies generally don't look ill once they get the worst of the medical issues dealt with, college chums will under-estimate how ill he truly is. WG isn't a thing you put out front for sympathy.

I'm going to stick my foot in the muck with this statement: people at the age your son is, especially once they hit early 20's, are so self-absorbed, your son could be hit by a bus, and the reaction would be not how your son was but how witnessing the rollover affected them personally.

Thirty-five or forty years ago, if he was lucky enough to be diagnosed correctly, he still would have had a better chance of dying within two years (9 in 10 did die within that time frame) than living. Now, because of drugs, his prognosis is much better (perhaps 8% of WG patients die), but only (ONLY!) if he takes the drugs and follows doctor's orders.

Sangye
01-02-2010, 03:50 PM
It's usually not a good idea to go off cytoxan with nothing else (ie, Cellcept, imuran or methotrexate) to replace it at least for awhile. Unless he is completely free of all symptoms and has good energy, etc... he will likely need something less harsh than ctx to get into a strong remission and stay there. If he's got red hot joints and tendons, that's a sign of active Wegs. I get that when the Wegs is flared up or not fully under control.

I understand how he feels about Cellcept (or any other drug). When I finished a long course of ctx and pred, I was horrified to learn that I needed to go on Cellcept and stay there 1-2 yrs. I had NO idea how Wegs works and how risky it was to be unprotected. I'm a holistic physician (chiropractor) and had never been on any drugs. I couldn't imagine being on another one for that long! I had a MAJOR fit about it before giving in.

Once I went on it, my attitude changed completely. Cellcept is nothing like ctx. I hardly had any side effects. In fact, if the ritux works to get me into a remission, the plan is to go back on Cellcept indefinitely to maintain it. I'm okay with that. If it gives me my life back, I'll do it.

Does he have a Wegs specialist? Cellcept has decent research to support its use with Wegs. He may be a good candidate for it, or imuran or methotrexate might be better options.

Sangye
01-02-2010, 03:54 PM
Doug, you and I posted our replies at the same time. What do you mean "Cellcept can cause mental states?" Like depression?

Doug
01-02-2010, 04:00 PM
Yes, I saw that in a list of side affects. I'll attach a link...

CellCept Side Effects | Drugs.com (http://www.drugs.com/sfx/cellcept-side-effects.html)


"...[M]ental or mood changes (eg, abnormal thinking)...." is the exact phrase mentioned in this link.

Sangye
01-02-2010, 04:06 PM
Good to know. I've never heard anyone on it mention it, but it can be so hard to tell what's causing anxiety and/or depression-- the disease, pred, chronic illness, being SICK TO DEATH OF WEGS, drug side effects, or any of the fall-out from Wegs (job loss, wt gain, financial difficulty, etc...).

Sangye
01-02-2010, 04:08 PM
LOL-- just posted the reply above and saw the time 12:06 am. I thought, "Wow, I must have to change the time setting in this new program. It's way off." I was thinking it was around 11:00. Guess I'll just adjust my own head.

pberggren1
01-02-2010, 04:39 PM
I get a little whacky sometimes being on Cellcept.

Bonnie, I was 26 when I was diagnosed. It came on very fast. Healthy one day and then 6 weeks later in the ER and couldn't breath through nose, massive pain like I have never had before or since, lost 40 pounds, couldn't walk, couldn't taste or smell, hard to swallow, etc. You get the idea. The ER doc, who is now my nephrologist, said that I probably had about another week to live. But thank God he was brilliant and had me diagnosed in 15 minutes.

Bonnie, I have a telephone with North American long distance bundle. You or your son can call me any time.

Home: 306-791-7086

Cell: 306-774-5801

Please don't hesitate to call. I don't think your son realizes the danger he is in. If you guys want me to call you, let me know on this site.

Over and Out,
Phil of the north

Jack
01-02-2010, 08:14 PM
I've been on Cellcept for a long time now (probably one of the first to use it for Wegs in this country) and I like to think that my mental state is OK. I do get more emotional than I used to and don't handle stress anything like as well, but I allow myself that.

elephant
01-02-2010, 11:47 PM
I myself know that I will have to be on cellcept for the rest of my life. I would like to stop the cyclosporine in the future, but need to talk to my rheumatologist about this or mabey even one that specializes in WG. I personally think that if I go off cellcept I will have a full blown flare of WG. The cyclosporine did not keep me in remission and of course no one knew (Docs) that I had WG . I will cross that bridge when it happens. I know I am anxious about my WG and hoping a flare doesn't happen.
It's like I go thruough a body check every morning.
eyes- not red
joints-not swollen or painful
lungs- not short of breath
nose- no blood or crusting or painful
how I feel today- ok
You all get the picture....

Jack
01-03-2010, 12:16 AM
Cyclosporin did not keep me in remission either, hence the switch to Cellcept. No problems since.

pberggren1
01-03-2010, 01:25 AM
How many years have you been on Cellcept Jack?

Sangye
01-03-2010, 02:10 AM
I think the increased emotions are more likely due to pred than Cellcept.

Elephant, I know exactly what you mean by the full-body scan! When people ask me how I'm doing, I have to pause while I do a "system scan." They don't know what the pause is about, of course, so most interpret it as me being annoyed by the question.

Phil, I hope you get to talk to Bonnie's son. Because you were so young when you got Wegs, you can really help him.

pberggren1
01-03-2010, 02:15 AM
So do I Sangye.

Bonnie, please respond - I'm extremely understanding and easy to talk to.

BonnieB
01-07-2010, 03:14 PM
pberggren1- thanks for your insight, I do believe my son's age is both helpful and hurtful- he loathes the idea of "sickness" so its difficult to get him to get up n times for his med schedule- on the other hand he is very determined, which helps.
I try to respect his autonomy and still steer him to his meds. He does get hot swollen joints- one day his left foot the next day a thumb, etc- I think it s the wegenr's and he has fewer and fewer the last month , i think the rituxan has kicked in and his sed rate is down to 20- the lowest ever. We go back to mayo next month- the docs there he really likes and respects- i believe he'll listen to them. T he other "bonnie" is very lucky her son is doing so well- mine lost 30 lbs, is still skeletal despite all the steroids. This disease is so variable- reading everyone's experiences is so mind boggling , no two are alike, even faintly similar!
Thanks for all your help, thanks to all of you for sharing!

Sangye
01-07-2010, 03:22 PM
The hot swollen joints are a Wegs thing. I'm glad to hear they're decreasing along with the sed rate. And really really glad he's got Wegs specialists at Mayo!

pberggren1
01-07-2010, 04:19 PM
It is mind boggling Bonnie. Which Mayo do you guys go to MN, FL, or AZ? Do you live in one of those states? I hope he gets feeling better soon.

elephant
01-07-2010, 10:50 PM
Bonnie, that is good to hear that his sed rate is down. Glad the swollen joints are less. That is how my Wegeners started, one joint ( traveling from one joint to the other). Then really started to pound the body with several joints at once. It is a good sign that the Ritix is working.

BonnieB
01-08-2010, 01:44 PM
We live in texas and go to mayo in az- there they check with Specht (sp?) the head of the RAVE study that proved rituxan is as good as cytoxan as inducing remission for Wegeners. I don't think those patients were on anything but rituxan and then tapered off prednisone. So far I don;t think there are any studies showing the role of cellcept, imuran , methotrexate or anything else after treatment with rituxan. We are living in interesting times... all of you being treated are determining what will be the future standard of care for this disease. I know my son would have died without this option, the steroids alone wasted all his muscles, he is just now off oxygen, and his kidneys are badly damaged, we are hoping they can still get better. But he IS alive and has virtually no pain now! A little better every day!

elephant
01-08-2010, 10:40 PM
Bonnie, I just wanted to let you know your son will do good. I was 15 when I had the kidney failure ,( which lead to a Kidney transplant 9 years later)...I was wasting away, when I left the hospital I could barely walk and could not even run, like your son my muscles were so depleted.
Thanks goodness you got good treatment and your son diagnosed properly. It's so amazing how our bodies have gone through so much with this disease and most of us are able to bounce back. Some don't even get any damage form the disease and some do. We are here to listen to your story and help you any way we can. So glad your son is getting better every day. :)

moyan
01-09-2010, 01:55 AM
Thank you again, Sangye, it is the first time I see prednisone tends to make you forgetful, one load off my shoulkders.

BonnieB
01-09-2010, 09:52 AM
Thanks elephant, that is very encouraging. What you have been through! Amazing- thanks for being brave enough to share with us, and help us feel some comfort.

cutecats2
01-18-2010, 06:34 PM
well my mom when she was taking pregnazone did plan meals and had sever mood swings she didnt really care what she said to anyone soo please whatever you do you cant take anything he says personal . she didnt really know what she said till later and well on the pregnazone she really didnt care ... sorry .. about anything else the doc for the crones ask her if they are leaisons and if there is scar tissue from those leasions ..
My mom just got out of the hospital after having her colen out and her intestines has leisons and tissue binding them together .. all got infected if he complains about abdominal pain have them check him ... her docs tested for other things . on her 4 th week of tests she was in the hospital with a 5 hour surgery of just trying to seperate her intestines and a colostomy bag .. of course she has uterus involvement galbladder and ingfection and scar tissue ..
i am sure he will do well ... and well school if he is in a boarding school thats hard .. you dont know when this will act up also important get a
medical allert neckace or something .. some docs have no idea what they are looking at and it will serve him well in a pinch ..
take care and my mom is working on 20 years with this .. of course she does all the very rare stuff ..
again my thoughts are with you .

Jeff
03-01-2010, 04:49 PM
My 18 year old son was just diagnosed with both Crohn's and Wegener's. He's been in the hospital (Beth Israel, Boston), for two weeks now and had just about every specialty known to man working him up. A lung biopsy was the defining procedure and he definitely has Wegener's.

My husband is a doctor and is very freaked out -- freaked out beyond words. My son is a senior in high school. He's been started on a high dose of intravenous preg for 3-days in the hospital and then he'll be released from the hospital and put on 60mgs. of preg, plus Cyt (or something that starts like that -- it's a cancer drug), for 3-months. The rheum. who is working with us was very optimistic that our son will tolerate everything just fine and will be able to go back to school, but his Crohn's doctor isn't so optimistic. She said tonight "He has a long road ahead of him." Needless to say I'm very freaked out. My son goes to boarding school and at this point, there is no way we can send him back to school not knowing how he's going to react to the meds. He's determined to continue applying to college and get his apps in. He has to bank his sperm next week, before they start the cancer med., in case it makes him sterile. This is all so much -- overwhelming, really. It's like one day he was fine, the next day he had stomach problems, and the day after that he had fever and strep and a runny nose and a cough and it all went downhill from there. Only lung involvement with the Wegs so far -- no kidney involvement YET. Any advice would be much appreciated. Should he take the year off from school? Does anyone tolerate the cancer med without getting sick to their stomach? What can I do for my kid? He's moody as it is -- how bad are his moods going to get, exactly? Any and all advice is most welcome. Oh -- I asked about the new drug that I read about on here -- something that starts with an "R," and the rheumatologist said that the initial study wasn't big enough so that she'd recommend it to start. She consulted with some bigwig Weg's specialist at Boston University and said he agreed with her treatment plan. She says she has a number of Weg patients who are doing great and who have been in remission for years. Is she just painting a very sunny picture or does this happen?
Thanks everyone for your advice. I am a very worried and freaked out mother.

I'am new to this, and do not type to well. We have a son that was diagnosed at 17. Lots of
info.email me and i will give you our phone # [email protected]

jola57
03-01-2010, 04:52 PM
Jeff even if you don't type so well, visit us and read our posts. You can just answer when you feel like

elephant
03-01-2010, 10:01 PM
Jeff you will learn so much on this forum. We will do what we can to help you out in any way. :)

JanW
03-02-2010, 01:02 AM
Yes, Jeff, we are here to help. Just ask.

Sangye
03-02-2010, 01:46 AM
Hi Jeff, ditto what everyone else has said! We're glad you're here.